Love, courage and inspiration: Photos from the tremendous life of Jonathan Pitre

Late general manager of the Ottawa Senators, Bryan Murray, Pierre Dorion and Randy Lee, sign Jonathan Pitre as a pro scout for one day at the Canadian Tire Centre in Ottawa, November 20, 2014.

Readers around the world were moved by Jonathan Pitre’s strength and courage. He was an inspiration to us all.Julie Oliver/Postmedia

Jonathan PitreJulie Oliver/Ottawa Citizen

Some play time with Gibson. "He's my best friend - my only real friend," says Jonathan. "We have an unbelievable bond. He knows when I'm down and cheers me up."Julie Oliver/Ottawa Citizen

Even amidst the painful and tiring task of washing and re-dressing all of his wounds - which takes four hours and must be done every other day - Tina and Jonathan laugh often and heartily. Julie Oliver/Ottawa Citizen

"Butterfly Child" Jonathan Pitre was the first Canadian to undergo a bone-marrow transplant developed in the US to improve the devastating symptoms of his Epidermolysis Bullosa (EB). Julie Oliver/Ottawa Citizen

Jonathan Pitre and his mother, Tina Boileau at the hospital in Minneapolis.

Jonathan Pitre/courtesy of the family

Jonathan Pitre/courtesy of the family

Jonathan Pitre spoke about philanthropy as the guest speaker of the 21st Annual AFP Ottawa Philanthropy Awards held at the Shaw Centre on Thursday, November 19, 2015. Caroline Phillips/Ottawa Citizen

Jonathan Pitre.Tina Boileau

Jonathan Pitre and his mother, Tina Boileau, in hospital in Minneapolis.Julie Oliver/Postmedia

Jonathan Pitre reading on his iPad while back in his apartment on Wednesday. Tina Boileau

Like a surgical unit, Tina has everything laid out in her bedroom next to the bathroom: bandages, tape, cushy mats and a warm heater to help Jonathan stay warm until all the bandages are reapplied for another day. Like many other 14-year-old boys, Jonathan Pitre loves sports, dreams of a future as a coach and has a crush on a cute girl at school. But unlike most boys his age, Jonathan suffers from Epidermolysis Bullosa (EB) - a rare disease defined by severe blistering and shearing of the skin that leaves Jonathan in constant pain - the likes of which most would find intolerable. (Julie Oliver / Ottawa Citizen)JULIE OLIVER/OTTAWA CITIZEN

Jonathan Pitre was exhausted but he found some strength while watching the Ottawa Senators close out the New York Rangers in Game 6 of their second-round playoff series in 2017.Tina Boileau

Jonathan Pitre’s mother, Tina Boileau tweeted this photo of Jonathan with Sens regalia cheering on his favourite team from his hospital bed.Tina Boileau/Twitter

Jonathan Pitre pictured in Dec. 2017Tina Boileau

Jonathan Pitre's skin.

Jonathan's pain threshold is unimaginable for most, but still antibiotics and pain relievers play a daily role in his life. He takes half a dozen pills three times a day along with two doses of methadone just to make the pain tolerable. Julie Oliver/Ottawa Citizen

Jonathan Pitre ./Twitter

A day of celebration in 2017 when Jonathan Pitre left the hospital.Tina Boileau

Late general manager of the Ottawa Senators, Bryan Murray signs Jonathan Pitre as a pro scout for one day at the Canadian Tire Centre in Ottawa, November 20, 2014. Jean Levac/Ottawa Citizen

Jonathan Pitre inspired students at the We Day festivities in Ottawa, April 01, 2015. Jean Levac/Ottawa Citizen

Jonathan Pitre and his mother, Tina Boileau.Tina Boileau/.

Jonathan Pitre at his Minnesota apartment.Tina Boileau

Jonathan Pitre on his way home. Credit Tina Boileau/-

Jonathan Pitre being released from hospital in 2017.Tina Boileau

Jonathan went outside on a beautiful day in Minnesota, accompanied by his mother and his heavily-laden IV tree. Tina Boileau

Jonathan Pitre and Canadian Consul General Khawar Nasim make the call: "Lets play hockey!"Bruce Kluckhohn/NHLI via Getty Images

Jonathan Pitre enjoying a burger and fries after a rough stretch. Tina Boileau

Jonathan Pitre is comforted by his mother, Tina Boileau, following a draining round of radiation Wednesday (Sept. 7, 2016) at the University of Minnesota Masonic Children's Hospita on the even of becoming the first Canadian to undergo an EB bone marrow transplant.Julie Oliver/Postmedia

Photo of Jonathan Pitre and his mother, Tina Boileau, taken in Minnesota. Tina Boileau/-

Jonathan PitreTina Boileau/-

Jonathan Pitre undergoes full-body radiation at the University of Minnesota Masonic Children's Hospital./-

Jonathan Pitre is seen just before undergoing full-body radiation on Wednesday, April 12, 2017 at the University of Minnesota Masonic Children's Hospital.Tina Boileau/-

Jonathan Pitre rests in bed, his pillow with his Boston terrier, Gibson, on it close by.Tina Boileau/-

Jonathan Pitre and Canadian Consul General Khawar Nasim are seen on the scoreboard as they make the call: "Lets play hockey!"Bruce Garrioch/Postmedia

Jonathan Pitre and Kyle Turris, who stay in touch by email, talk during the Senators' visit.Bruce Garrioch/Postmedia

Jonathan Pitre readies for his second stem cell transplant, which will take place April 13th at the University of Minnesota Masonic Children's Hospital. Tina Boileau/-

The Ottawa Senators pose with Jonathan Pitre during a visit in Minneapolis on Wednesday, March 29, 2017. Photo by Bruce Garrioch/Postmedia/-

The Ottawa Senators pose with Jonathan Pitre during a visit in Minneapolis on Wednesday, March 29, 2017. Photo by Bruce Garrioch/Postmedia/-

Jonathan Pitre is back in a Minnesota hospital, where's he's fighting blood and lung infections in advance of a second stem cell transplant.Tina Boileau/-

Jonathan Pitre, in his car in Minnesota. Tina Boileau/-

Jonathan Pitre sponsored a hockey party at CHEO Saturday December 31, 2016 with money he was awarded with the RBC's Canada 150 initiative along with added money he donated. Kevin Keohane President & CEO at CHEO talks to Pitre who was video chat into the party.Ashley Fraser/Postmedia

Jonathan Pitre is celebrating Christmas in Minnesota this year as he awaits news on a possible new stem cell procedure./Tina Boileau

From left, Noemy Pitre, Jonathan Pitre and their mom, Tina Boileau, after finishing a 5K race in May 2016.Ashley Fraser/Postmedia

Jonathan Pitre and his mom, Tina Boileau. Taken on Friday October 7, 2016.

Photo of Jonathan Pitre. supplied by his mother, Tina Boileau /-

Jonathan Pitre in his room at the University of Minnesota Masonic Children's Hospital./-

Jonathan is helped into school by his teacher's aid, Nathalie Courillon-Chevalier. He arrives to school early and gets to classes a couple of minutes late to avoid all the traffic in the hallways. His skin is so sensitive, often the slightest of touches in the wrong place can hit a wound and cause excruciating pain. Jonathan suffers from Epidermolysis Bullosa (EB) - a rare disease defined by severe blistering and shearing of the skin that leaves Jonathan in constant pain - the likes of which most would find intolerable. Julie Oliver/Ottawa Citizen

"It's the first white blood cells we've seen since the transplant. So yes, it's working," said Tina Boileau, Jonathan Pitre's mother. Andrew Duffy/Postmedia

The night before Jonathan Pitre's last round of chemotherapy (Sunday, Sept. 12, 2016) is bath time in his room at the University of Minnesota Masonic Children's Hospital. It is a four-hour ordeal where his mother, Tina Boileau, carefully removes and replaces the dressings that cover almost his entire body. As his mother punctures the blisters and gently pads them with gauze, the agony becomes unbearable at times - especially in his weakened condition - and he needs another bump of painkillers. The chemo and radiation have removed all of his white blood cells, he's running a fever of 105 degrees on this night and he's exhausted. This is the critical post-transplant period where his body is reduced to an empty shell in the hopes his mother's transplanted stem cells will take hold inside of him and help reverse the catastrophic symptoms of his Epidermolysis Bullosa (EB. Julie Oliver/PostmediaJulie Oliver/Postmedia

Jonathan Pitre/courtesy of the family

Jonathan Pitre/courtesy of the family

The night before Jonathan Pitre's last round of chemotherapy (Sunday, Sept. 12, 2016) is bath time in his room at the University of Minnesota Masonic Children's Hospital. It is a four-hour ordeal where his mother, Tina Boileau, carefully removes and replaces the dressings that cover almost his entire body. As his mother punctures the blisters and gently pads them with gauze, the agony becomes unbearable at times - especially in his weakened condition - and he needs another bump of painkillers. The chemo and radiation have removed all of his white blood cells, he's running a fever of 105 degrees on this night and he's exhausted. This is the critical post-transplant period where his body is reduced to an empty shell in the hopes his mother's transplanted stem cells will take hold inside of him and help reverse the catastrophic symptoms of his Epidermolysis Bullosa (EB. Julie Oliver/PostmediaJulie Oliver/Postmedia

The night before Jonathan Pitre's last round of chemotherapy (Sunday, Sept. 12, 2016) is bath time in his room at the University of Minnesota Masonic Children's Hospital. It is a four-hour ordeal where his mother, Tina Boileau, carefully removes and replaces the dressings that cover almost his entire body. As his mother punctures the blisters and gently pads them with gauze, the agony becomes unbearable at times - especially in his weakened condition - and he needs another bump of painkillers. The chemo and radiation have removed all of his white blood cells, he's running a fever of 105 degrees on this night and he's exhausted. This is the critical post-transplant period where his body is reduced to an empty shell in the hopes his mother's transplanted stem cells will take hold inside of him and help reverse the catastrophic symptoms of his Epidermolysis Bullosa (Julie Oliver/Postmedia)Julie Oliver/Postmedia

Jonathan Pitre and his mom, Tina Boileau, have shaved their heads after Jonathan's hair began to fall out by the handful following his chemo treatments.Tina Boiileau via Facebook/-

Jonathan Pitre has asked doctors to provide him a written list of the conditions that he has to meet in order to be discharged from hospital. Among other things, he has to be free of complications such as infections, nausea and fevers.Julie Oliver/Postmedia

5:12 a.m. (Minnesota time), the University of Minnesota Masonic Children's Hospital is still shrouded in darkness, but Tina Boileau has woken up and is heading down to pre-op to get ready for the transplant surgery she hopes will change her son's life. Later today, those stem cells will be transplanted into her son, Jonathan Pitre, in the hope they will begin to heal his skin. Jonathan will be the first Canadian to receive an "EB bone marrow transplant." Julie Oliver/Postmedia

7:27 a.m. (Minnesota time). Tina Boileau jokes with the nurses en route to the OR, where surgeons will remove bone marrow - rich in the stem cells - from her hip bone at the University of Minnesota Masonic Children's Hospital Thursday (Sept. 8, 2016). Julie Oliver/Postmedia

6:18 a.m. (Minnesota time), Tina Boileau fields a call from the media about what lies ahead for her and Jonathan today - ground zero day - the day Tina Boileau's bone marrow - rich in the stem cells - will be removed from her hip bone at the University of Minnesota Masonic Children's Hospital Thursday (Sept. 8, 2016). Julie Oliver/Postmedia

Jonathan Pitre is comforted by his mother, Tina Boileau, following a draining round of radiation Wednesday (Sept. 7, 2016) at the University of Minnesota Masonic Children's Hospita on the even of becoming the first Canadian to undergo an EB bone marrow transplant.Julie Oliver/Postmedia

Jonathan Pitre is comforted by his mother, Tina Boileau, following a draining round of radiation Wednesday (Sept. 7, 2016) at the University of Minnesota Masonic Children's Hospita on the even of becoming the first Canadian to undergo an EB bone marrow transplant.Julie Oliver/Postmedia

Jonathan Pitre is comforted by his mother, Tina Boileau, following a draining round of radiation Wednesday (Sept. 7, 2016) at the University of Minnesota Masonic Children's Hospita on the even of becoming the first Canadian to undergo an EB bone marrow transplant.Julie Oliver/Postmedia

- Tina cries as she leaves her daughter, and Jonathan's younger sister, Noemy, behind in the driveway. Butterfly child, Jonathan Pitre, says goodbye to his sister and family as he leaves his Russell home Wednesday (August 17, 2016) for a bone marrow transplant operation in Minnesota. Jonathan, 16, who suffers from EB, will be travelling with his mom, Tina Boileau, who will be his transplant donor and will be with him for the next year in Minnesota for the groundbreaking, but risky, procedures that no other Canadian has ever undergone. Only about 30 transplants have been done on EB patients and about a quarter didn't live through them. Some others didn't have the intended result, but about half were able to relieve the horrible symptoms associated with EB. Julie Oliver/PostmediaJulie Oliver/Postmedia

Tina blows a kiss to her family as the pair leave the driveway. Butterfly child, Jonathan Pitre, says goodbye to his sister and family as he leaves his Russell home Wednesday (August 17, 2016) for a bone marrow transplant operation in Minnesota. Jonathan, 16, who suffers from EB, will be travelling with his mom, Tina Boileau, who will be his transplant donor and will be with him for the next year in Minnesota for the groundbreaking, but risky, procedures that no other Canadian has ever undergone. Only about 30 transplants have been done on EB patients and about a quarter didn't live through them. Some others didn't have the intended result, but about half were able to relieve the horrible symptoms associated with EB. Julie Oliver/PostmediaJulie Oliver/Postmedia

Along with his mom, Tina Boileau, "Butterfly Boy" Jonathan Pitre, now 15, reflects on his eventful year from their home in Russell Tuesday, Dec. 8, 2015. Julie Oliver/Ottawa Citizen

'I feel them closing up,' Jonathan Pitre says of his hands, which have gotten worse in the past year. Julie Oliver/Ottawa Citizen

"Butterfly Child" Jonathan Pitre, 16, will be the first Canadian to undergo a bone-marrow transplant developed in the US to dramatically improve the devastating symptoms of his Epidermolysis Bullosa (EB).Julie Oliver/Ottawa Citizen

General manager of the Ottawa Senators, Bryan Murray (l) Jonathan Pitre as a pro scout for one day at the Canadian Tire Centre in Ottawa, November 20, 2014. Jean Levac/Ottawa Citizen

6 a.m.: After teeth brushing and washing comes the brushing of the hair, which Jonathan winces at when his mom accidentally hits a couple of sore spots on his head. Julie Oliver/Ottawa Citizen

Craig Kielburger (R) of We Day was on stage with Jonathan Pitre during the We Day festivities in Ottawa, April 01, 2015. (Jean Levac/ Ottawa Citizen)Jean Levac/Ottawa Citizen

Jonathan Pitre gets a cut by House of Barons senior barber, James Fowler, during a promotional event in the Byward Market Thursday September 10, 2015 for Opera Lyra's Figaro, the Barber of Seville, which runs from Saturday September 26 to Saturday October 3 at the National Arts Centre. (Darren Brown/Ottawa Citizen)Darren Brown/Ottawa Citizen

Pittsburgh Penguins star Sidney Crosby arranged to have his Montreal tailor prepare a business suit that would allow Jonathan Pitre, 14, to enter a rink with the same style as any NHL player or executive./Twitter.com

Craig Kielburger (R) of We Day was on stage with Jonathan Pitre during the We Day festivities in Ottawa, April 01, 2015.Jean Levac/Ottawa Citizen

Jonathan Pitre inspired students at the We Day festivities in Ottawa, April 01, 2015.Jean Levac/Ottawa Citizen

General manager of the Ottawa Senators, Bryan Murray, left, signs Jonathan Pitre as a pro scout for one day.Jean Levac/Ottawa Citizen

Like a surgical unit, Tina has everything laid out in her bedroom next to the bathroom: bandages, tape, cushy mats and a warm heater to help Jonathan stay warm until all the bandages are reapplied for another day. Julie Oliver/Ottawa Citizen

A few blisters must be pierced with a pin to stop the wound from getting bigger on his hand. Julie Oliver/Ottawa Citizen

3.30 p.m. Bath time. Washing Jonathan (in a tub filled with warm water, pool salt and some bleach), stripping and re-dressing all of his wounds can take up to four hours and must be done every other day to fend off infection and keep the blistering at bay as much as possible. It is painful and Jonathan dreads it, but it is a fact of life for kids with EB. Julie Oliver/Ottawa Citizen

A Kindle is another modern tool that really helps kids with EB, allowing them to read without holding books. It is the endless cycle of blistering and scarring that often leads to a fusing of the fingers. Jonathan has had a number of surgeries to literally pry the fingers apart and his mom is careful to wrap them separately in bandages to keep them working as best as possible. Julie Oliver/Ottawa Citizen

THE FACE OF EB. Russell teenager, Jonathan Pitre. "I see myself as a warrior," he says. "I want everyone to know what this is so we can fight it... and beat it." Like many other 14-year-old boys, Jonathan Pitre loves sports, dreams of a future as a coach and has a crush on a cute girl at school. But unlike most boys his age, Jonathan suffers from Epidermolysis Bullosa (EB) - a rare disease defined by severe blistering and shearing of the skin that leaves Jonathan in constant pain - the likes of which most would find intolerable. (Julie Oliver / Ottawa Citizen)Julie Oliver/Ottawa Citizen

Jonathan and his mother, Tina Boileau, are inseparable. "She is my rock," he says bluntly. "I couldn't live without her." Tina allows that if there is an upside to EB, it is the special bond she shares with her son. Like many other 14-year-old boys, Jonathan Pitre loves sports, dreams of a future as a coach and has a crush on a cute girl at school. But unlike most boys his age, Jonathan suffers from Epidermolysis Bullosa (EB) - a rare disease defined by severe blistering and shearing of the skin that leaves Jonathan in constant pain - the likes of which most would find intolerable. (Julie Oliver / Ottawa Citizen)JULIE OLIVER/Ottawa Citizen

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